I am grateful for ALL the DA threads for the following reasons:
The only warning I received from the neurologist when prescribed DA was a throwaway comment about increase in gambling activity
I read the patient information leaflet enclosed with the first prescription & could honestly say that the OCD warnings did not apply to me
I would never, in a million years, have associated my increased internet shopping activities with PD medication
I would never, in 5 mllion years have broached the subject with my o/h, my GP or my consultant
I, having been made aware can be vigilant, as can my o/h
I am reassured to know that DA's are not all bad
I personally find the passion that accompaniess the postings re the subject to be refreshing. But it is the factual information I find invaluable
Let’s be honest here. Half the posts on the DA threads have been insults and/or people reeling from those insults. It’s a disconcerting feeling to have someone call you by a derogatory name on a public forum (especially when you’re not used to being insulted in ‘real’ life) when all you’re trying to do is offer an opinion or strike a balance. The Moderator’s call is for politeness, and I see nothing wrong with that.
Since the beginning of November across 3 threads on this subject, there have been 10 new forum members posting for the first time, their DA side effects stories.
As Ray said previously the theme of the postings has been;
"Nobody warned me of the side effects"
"I just read the info about side effects on this forum and it explains everything that i have been going through"
"I just joined the forum because my O/H has started taking DA's and his/her behaviour is destroying our relationship, now i can understand what's happening"
I cant speak for Ray or others, but i personally find it very sad that by trying to help these desperate people who are looking for answers, along with trying to initiate an awareness campaign making health professional and drug companies more accountable, I'm accused of "Forum Domination" by PUK, followed by this outrageous allegation from Lily stating half of the posts on this subject are just aimed at insulting other forum users.
I'm not going to post again on this forum, because if this is what you get for trying to help others then QUITE FRANKLY its not worth it.
As Ray said previously the theme of the postings has been;
"Nobody warned me of the side effects"
"I just read the info about side effects on this forum and it explains everything that i have been going through"
"I just joined the forum because my O/H has started taking DA's and his/her behaviour is destroying our relationship, now i can understand what's happening"
I cant speak for Ray or others, but i personally find it very sad that by trying to help these desperate people who are looking for answers, along with trying to initiate an awareness campaign making health professional and drug companies more accountable, I'm accused of "Forum Domination" by PUK, followed by this outrageous allegation from Lily stating half of the posts on this subject are just aimed at insulting other forum users.
I'm not going to post again on this forum, because if this is what you get for trying to help others then QUITE FRANKLY its not worth it.
I think that it is really sad that we cant all agree to differ.I have used the site for some time but am also considering leaving as it would appear that there are some people who are not happy unless they are causing bother. People have a right to tell their stories and I know that their words have helped many people, why should this stop? Just because others cant simply get along with their own lives. No body as far as I am aware has ever said that DA's cause OCD for all people and there has always been a recognition that DA's when they work are really good. Why is it so wrong for people to be forewarned?
What also appears to me is that when those that disagree with the DA thread complain the moderator sides with them,I believe that this is wrong. I am simply saying it as I see it and no doubt will be responded to in an aggressive, bullying manner for being truthful. Bring it on !!!
Glenchass
What also appears to me is that when those that disagree with the DA thread complain the moderator sides with them,I believe that this is wrong. I am simply saying it as I see it and no doubt will be responded to in an aggressive, bullying manner for being truthful. Bring it on !!!
Glenchass
Hi,
When Ezinda gives a reasonable,detailed appeal for calm regarding the DA threads.Why does the arguing still carry on,in such a confrontational manner.The moderators have acknowledged the importance of the debate as seen from both sides.However,the tone of the postings and the attacking of others HAS been a concern.Everyone is entitled to their opinion and shouldent feel afraid to post.This was why i personally continued to post my views.
I don't know why it is that the DA campaigners become so irate and confrontational.I don't believe the moderators side with anyone,they have to do their job.Views can be shared and disagreements discussed in a civil manner.I always try to discuss things in a reasonable way and feel this is backed up by the fact that i have never been warned or written to,even in the midst of receiving verbal abuse.
I don't believe as mentioned on this thread,that we should agree to differ.Its through deep meaningful discussion that issues like this are brought to the fore and a one sided conclusion is avoided,especially concerning the DA campaign.If everyone works together,that is when true results and changes are made.For those talking of not posting again,your views may not always coincide with others,but are never the less still important,you should not give up.
Have only decided to have my say,because its my right,
as i feel that discussions should carry on,but civilly
read the heading first,and think before you post.
All the best
Titan
When Ezinda gives a reasonable,detailed appeal for calm regarding the DA threads.Why does the arguing still carry on,in such a confrontational manner.The moderators have acknowledged the importance of the debate as seen from both sides.However,the tone of the postings and the attacking of others HAS been a concern.Everyone is entitled to their opinion and shouldent feel afraid to post.This was why i personally continued to post my views.
I don't know why it is that the DA campaigners become so irate and confrontational.I don't believe the moderators side with anyone,they have to do their job.Views can be shared and disagreements discussed in a civil manner.I always try to discuss things in a reasonable way and feel this is backed up by the fact that i have never been warned or written to,even in the midst of receiving verbal abuse.
I don't believe as mentioned on this thread,that we should agree to differ.Its through deep meaningful discussion that issues like this are brought to the fore and a one sided conclusion is avoided,especially concerning the DA campaign.If everyone works together,that is when true results and changes are made.For those talking of not posting again,your views may not always coincide with others,but are never the less still important,you should not give up.
Have only decided to have my say,because its my right,
as i feel that discussions should carry on,but civilly
read the heading first,and think before you post.
All the best
Titan
Ludi incipiant! 
I have followed this thread with mounting fear and anger that people facing the hell I faced, and am still facing, will not be able to access the information and support that I found in the forum.
The name of the forum includes the phrase" should patients be warned?"
So it is clear that it is a discussion of the devastating effects these drugs have on 1 in 5 of patients taking them.
I spent nearly every night for 3 weeks searching the internet for help when my husband of 46 years dreadful behaviour was revealed.
We received no help from our consultant or GP and when I stumbled into the forum I had made my mind up that only suicide would end this nightmare.
The help and support of Ray and Blue-eyes and others literally saved the lives of me and my husband.
We are still limping into the New Year trying to cope with withdrawal problems, with ruined finances,a heartbroken family and a 46 year marriage teetering on the brink of destruction but we are alive and have some hope.
Do nothing that will threaten this lifeline and take away the only source of information,advice and support from others who will perish without it.
The name of the forum includes the phrase" should patients be warned?"
So it is clear that it is a discussion of the devastating effects these drugs have on 1 in 5 of patients taking them.
I spent nearly every night for 3 weeks searching the internet for help when my husband of 46 years dreadful behaviour was revealed.
We received no help from our consultant or GP and when I stumbled into the forum I had made my mind up that only suicide would end this nightmare.
The help and support of Ray and Blue-eyes and others literally saved the lives of me and my husband.
We are still limping into the New Year trying to cope with withdrawal problems, with ruined finances,a heartbroken family and a 46 year marriage teetering on the brink of destruction but we are alive and have some hope.
Do nothing that will threaten this lifeline and take away the only source of information,advice and support from others who will perish without it.
The point of any forum is to allow open discussion on topics of interest between its members
All the medication we take for PD causes some side effects including impulsive/ obsessive behaviour, hypersexuality and compulsive gambling. Dopamine Agonists,however, cause the most extreme behaviour.
Until there is a cure or some way of negating the side effects we are stuck with them.
The reason DAs is a hot topic are the nature of those side effects and the concern, embarrassment etc that prevent open discussion. Add to this the burying the head in the sand policy of your average neuros, the financial might of the drug companyies, the fear of litigation and the numbers of people affected.
In todays blame culture everyone is scared:
The drug companies fear a big compensation payout
The neuros fear they will be caught up in this because they diagnosed the drug
The PUK supports the above because it doesnt want to upset anyone
Hence the sweep it under the carpet approach.
Which leaves the people with PD who have to live with this twisting in the wind.
Those seriously affected are aggrieved because its ruined their lives
Newbies are scared because they dont know what to expect.
In the middle are a body of people with a varying degree of effect from the drugs which they must take to survive.
What we require is a sensible approach that actually helps people to deal with these issues on a day to to day basis. Just being able to talk with someone who has gone through the same experiences is often enough to comfort people that they are not alone and that they can get through it.
We need a support mechanism that is run by PWP for PWP. Those that have been through it helping and being helped by each other.
The compensation aspect can then be ringfenced and dealt with appropriately.
The majority are not looking for millions in compensation but for help.
Thats why the DAs come up time and time again as a subject.
Its a cry for help.
The PUK is supposed to be there to help.
Do it!
Earn your money. Is there anyone in the PUK who actually has PD, who has first hand experience of DAs.
If so where are you????
If not why not????
The vast majority of medical professionals dont even know this forum exists (try asking your neuro) and yet it could be used for so much.
There is too much emphasis on a cure thats not going to happen. (ask yourself. who is really interested in finding a "cure" to a multi billon drug earner?)
The emphasis ought to be on how to live with it.
Stop treating us like kids and using this forum as a device to keep us content.
Merry Xmas
Leyther
All the medication we take for PD causes some side effects including impulsive/ obsessive behaviour, hypersexuality and compulsive gambling. Dopamine Agonists,however, cause the most extreme behaviour.
Until there is a cure or some way of negating the side effects we are stuck with them.
The reason DAs is a hot topic are the nature of those side effects and the concern, embarrassment etc that prevent open discussion. Add to this the burying the head in the sand policy of your average neuros, the financial might of the drug companyies, the fear of litigation and the numbers of people affected.
In todays blame culture everyone is scared:
The drug companies fear a big compensation payout
The neuros fear they will be caught up in this because they diagnosed the drug
The PUK supports the above because it doesnt want to upset anyone
Hence the sweep it under the carpet approach.
Which leaves the people with PD who have to live with this twisting in the wind.
Those seriously affected are aggrieved because its ruined their lives
Newbies are scared because they dont know what to expect.
In the middle are a body of people with a varying degree of effect from the drugs which they must take to survive.
What we require is a sensible approach that actually helps people to deal with these issues on a day to to day basis. Just being able to talk with someone who has gone through the same experiences is often enough to comfort people that they are not alone and that they can get through it.
We need a support mechanism that is run by PWP for PWP. Those that have been through it helping and being helped by each other.
The compensation aspect can then be ringfenced and dealt with appropriately.
The majority are not looking for millions in compensation but for help.
Thats why the DAs come up time and time again as a subject.
Its a cry for help.
The PUK is supposed to be there to help.
Do it!
Earn your money. Is there anyone in the PUK who actually has PD, who has first hand experience of DAs.
If so where are you????
If not why not????
The vast majority of medical professionals dont even know this forum exists (try asking your neuro) and yet it could be used for so much.
There is too much emphasis on a cure thats not going to happen. (ask yourself. who is really interested in finding a "cure" to a multi billon drug earner?)
The emphasis ought to be on how to live with it.
Stop treating us like kids and using this forum as a device to keep us content.
Merry Xmas
Leyther
Hi Glenchass,
Please put aside thoughts of leaving the forum. You would be sorely missed and have so much to contribute. I'm sure there are lots (maybe hundreds) of people who, like me, have been following the DA threads but don't wish to post.
Best wishes, as always.
Please put aside thoughts of leaving the forum. You would be sorely missed and have so much to contribute. I'm sure there are lots (maybe hundreds) of people who, like me, have been following the DA threads but don't wish to post.
Best wishes, as always.
Hi Leyther.
I can confirm that there ARE PD sufferers working for PUK, but agree that the organisation's wheels seem to grind far too slowly.
As far as side effects go I accept that when a new drug is released it could well take years before all the problems come to light, and as a patient I'm prepared to take that risk.
What is NOT just, however, is that I was on DAs for 7 years from 2000-2007 and was literally driven OCD insane for that whole period, and didn't know why. It was only AFTER I came off the DA that I discovered the industry had become aware that DAs were causing these side effects back in 2002/2003.
Why was I left for over 4 years, during which my Neuro was well aware of all my weird behaviour, financial losses and police encounters, without being told?
Ray.
I can confirm that there ARE PD sufferers working for PUK, but agree that the organisation's wheels seem to grind far too slowly.
As far as side effects go I accept that when a new drug is released it could well take years before all the problems come to light, and as a patient I'm prepared to take that risk.
What is NOT just, however, is that I was on DAs for 7 years from 2000-2007 and was literally driven OCD insane for that whole period, and didn't know why. It was only AFTER I came off the DA that I discovered the industry had become aware that DAs were causing these side effects back in 2002/2003.
Why was I left for over 4 years, during which my Neuro was well aware of all my weird behaviour, financial losses and police encounters, without being told?
Ray.
yes i understand that ray
you are not alone
however i dont think anyone is going to get the answers as to why information wasnt forthcoming from the drug companies etc
whats done is done
the point im making is that if the PUK wish to end the cycle of DA horror stories on this forum and the subsequent arguments that surround it then they need to understand the problem and furthermore, ought, as an organisation that exist only to help PWPs, to actually set up a proper support mechanism that actually helps sufferers.
furthermore they ought to promote this and forge links with the medical profession so that there is communication and feedback
in other words do something anout what is a common problem.
from this a more accurate assesment can be made for compensation where appropriate.
Leyther
you are not alone
however i dont think anyone is going to get the answers as to why information wasnt forthcoming from the drug companies etc
whats done is done
the point im making is that if the PUK wish to end the cycle of DA horror stories on this forum and the subsequent arguments that surround it then they need to understand the problem and furthermore, ought, as an organisation that exist only to help PWPs, to actually set up a proper support mechanism that actually helps sufferers.
furthermore they ought to promote this and forge links with the medical profession so that there is communication and feedback
in other words do something anout what is a common problem.
from this a more accurate assesment can be made for compensation where appropriate.
Leyther
I think the PUK is unclear whether its main aim is (a) to support research, or (b) to improve the lives of existing sufferers.
The whole DA/OCD issue - especially if PUK were to get involved in compensation - would be a mammoth project for it to take on. Still a commendable and much needed project though.
However its first tasks would be (i) to absolutely GUARANTEE that every single new PD diagnosee gets ALL the info we know they need (from a central register?), and (ii) to ENSURE that EVERYONE prescribed DAs in the past, and still taking them, NOW knows everything, and ISN'T currently suffering from OCDs (whether they admit it or not: this may require some sleuthing).
.
The whole DA/OCD issue - especially if PUK were to get involved in compensation - would be a mammoth project for it to take on. Still a commendable and much needed project though.
However its first tasks would be (i) to absolutely GUARANTEE that every single new PD diagnosee gets ALL the info we know they need (from a central register?), and (ii) to ENSURE that EVERYONE prescribed DAs in the past, and still taking them, NOW knows everything, and ISN'T currently suffering from OCDs (whether they admit it or not: this may require some sleuthing).
.
It would require a fresh approach and an understanding of how DAs affect people which can only be provided by those who have been through the experience.
Small groups maybe based on the way the Alcoholics Anonymous work. Communucation with neuros, a proper support system.
I doubt it would cost that much and the PUK are there to help PWP
They just need to be more aware of where that helps needed
Small groups maybe based on the way the Alcoholics Anonymous work. Communucation with neuros, a proper support system.
I doubt it would cost that much and the PUK are there to help PWP
They just need to be more aware of where that helps needed
"Ludi incipiant".....let the games begin.
hi turnip,
Now I'm no expert on Greek Mythology, but i believe it was the titan's who were the supreme game players? After all titan Gods ruled Mount Olympus in the world of mythology.....
For my part i much prefer to stay in the world of current reality. Because while some forum users like to play their games, my only interest is trying to prevent pwp in the future from having lives destroyed by the medical world not doing there jobs correctly. You can be assured i will be at the PUK meeting in London on January 13th, however i wonder if any titan gods will be attending..
hi turnip,
Now I'm no expert on Greek Mythology, but i believe it was the titan's who were the supreme game players? After all titan Gods ruled Mount Olympus in the world of mythology.....
For my part i much prefer to stay in the world of current reality. Because while some forum users like to play their games, my only interest is trying to prevent pwp in the future from having lives destroyed by the medical world not doing there jobs correctly. You can be assured i will be at the PUK meeting in London on January 13th, however i wonder if any titan gods will be attending..
when i was in total melt down cus of das and break down ,i was out of control,but i was strung up by some and my life became a livin nite mare ,and as today stands im well from those dreaded pills and still i feel like im strung up by thse same people,how do u think my confedece self estem is efected as well as my pd ,anxierty still low,das dont just effect u whislt u under there control ,they effect u even whn u not on erm ,cus of the damage they have done to ur life
I have to agree with Leyther, I too see it as a part of PUK's duties as a supporting body for pwp to stand up and be counted regarding the DA situation. Does anybody know where in London the meeting is, I would really like to attend but not too sure if I could get there alone. If somebody can tell me where it is I just might be able to find someone to support me in attending co I really do feel that this is a very important issue.
regards
Glenchass
regards
Glenchass
hi blueyes47
i admit my quote is a bit poncy but from a neutral point of view it looks like two sets of gladiators dying to chop bits out of each other for the entertainment of the unseen crowd.
but to carry on the classical theme i shall follow the example of pontius pilate. avoiding being executed by caligula hopefully.
the sad thing is i dont think there is actually that much difference between people, excepting the odd ignorant moron who should simply be ignored.
to me the facts are
1 levadopa has some nasty side effects, especially for early onset, namely dyskenesia
2 das can be used to delay the use of levadopa
3 1/5 of people who use das have some compulsive behaviours (me included)
4 an unknown (but highly significant) percentage of people who use das have extreme compulsive behavious (me excluded) (extreme behaviour is not easy to define but you know when you have had it)
5 the rules need to be changed to stop 4 or at least minimise it as far as possible
6 help needs to be provided for people in 4 to escape
7 compensation should be provided to people in 4 but not 3
8 patients should make the choice knowing the facts
what is there to disagree about?
i am off to cultivate my garden, to be anachronistic.
good luck
i admit my quote is a bit poncy but from a neutral point of view it looks like two sets of gladiators dying to chop bits out of each other for the entertainment of the unseen crowd.
but to carry on the classical theme i shall follow the example of pontius pilate. avoiding being executed by caligula hopefully.
the sad thing is i dont think there is actually that much difference between people, excepting the odd ignorant moron who should simply be ignored.
to me the facts are
1 levadopa has some nasty side effects, especially for early onset, namely dyskenesia
2 das can be used to delay the use of levadopa
3 1/5 of people who use das have some compulsive behaviours (me included)
4 an unknown (but highly significant) percentage of people who use das have extreme compulsive behavious (me excluded) (extreme behaviour is not easy to define but you know when you have had it)
5 the rules need to be changed to stop 4 or at least minimise it as far as possible
6 help needs to be provided for people in 4 to escape
7 compensation should be provided to people in 4 but not 3
8 patients should make the choice knowing the facts
what is there to disagree about?
i am off to cultivate my garden, to be anachronistic.
good luck
Glenchass
I believe the meeting is at PUK's head office. The address is on my 24/12 post under DOPAMINE AGONIST CAMPAIGN, in TREATMENTS.
Ray.
I believe the meeting is at PUK's head office. The address is on my 24/12 post under DOPAMINE AGONIST CAMPAIGN, in TREATMENTS.
Ray.
Hi Blue eyes 47,
I see you did post again.
We are not so far apart with our agendas. Information about all side effects of all drugs, prescribed for our condition. Co-operation from all medical staff involved in prescribing , and follow up of effect of these drugs.
I think it 's very sad to read turnip's ( he describes himself as neutral) views on the D.A. problem ; ' two sets of gladiators dying to chop bits out of each other for the entertainment of the unseen crowd'
It is a tragedy if newly diagnosed P.W.P. feel like this, an unseen crowd.
Best wishes
I see you did post again.
We are not so far apart with our agendas. Information about all side effects of all drugs, prescribed for our condition. Co-operation from all medical staff involved in prescribing , and follow up of effect of these drugs.
I think it 's very sad to read turnip's ( he describes himself as neutral) views on the D.A. problem ; ' two sets of gladiators dying to chop bits out of each other for the entertainment of the unseen crowd'
It is a tragedy if newly diagnosed P.W.P. feel like this, an unseen crowd.
Best wishes
.
Turnip.
Using your numbering:
1. I believe these threads (and the meeting) should solely be about OCDs. Although dyskenesia is a serious problem, it is not relevant here. Nor are the specific reasons why - in any given case - a consultant chooses one particular drug over another.
3. Current "official" figures say 17.1% of those taking DAs, and 16.9% of those on L-Dopa, will be affected by compulsive behaviour (although I personally, having been in contact with many from both groups, have NEVER met an OCD sufferer who wasn't on DAs).
4. It's very hard to explain/describe to those who've not been through the really POWERFUL, all-encompassing OCD experience what it's like, but I found that irrespective of the subject area (gambling, sex, spending, violence, crime, delusions, etc) I went through various states of awareness.
Sometimes I knew that what I was doing was wrong, but try as I might I genuinely couldn't stop myself. Most of the time I had absolutely NO CONCEPT whatsoever of what right and wrong even meant. Occasionally I DID know the difference but just didn't care - I was so engrossed in, and excited by, the thrills of the casino or of powerful new sexual "highs" that I just floated away on cloud nine.
It is usually the need for these amazing highs that drive the sufferer to deny everything. To rob, defraud, borrow, sell all one's assets, cash in savings, etc. It makes you a devious, lying, sneaking, cheating member of the lowest level of rat, destroying everything and everybody around you. And it will grind you right into the ground such that never again will you have the free will to escape.
It sounds like hell.
It is.
Ray.
Turnip.
Using your numbering:
1. I believe these threads (and the meeting) should solely be about OCDs. Although dyskenesia is a serious problem, it is not relevant here. Nor are the specific reasons why - in any given case - a consultant chooses one particular drug over another.
3. Current "official" figures say 17.1% of those taking DAs, and 16.9% of those on L-Dopa, will be affected by compulsive behaviour (although I personally, having been in contact with many from both groups, have NEVER met an OCD sufferer who wasn't on DAs).
4. It's very hard to explain/describe to those who've not been through the really POWERFUL, all-encompassing OCD experience what it's like, but I found that irrespective of the subject area (gambling, sex, spending, violence, crime, delusions, etc) I went through various states of awareness.
Sometimes I knew that what I was doing was wrong, but try as I might I genuinely couldn't stop myself. Most of the time I had absolutely NO CONCEPT whatsoever of what right and wrong even meant. Occasionally I DID know the difference but just didn't care - I was so engrossed in, and excited by, the thrills of the casino or of powerful new sexual "highs" that I just floated away on cloud nine.
It is usually the need for these amazing highs that drive the sufferer to deny everything. To rob, defraud, borrow, sell all one's assets, cash in savings, etc. It makes you a devious, lying, sneaking, cheating member of the lowest level of rat, destroying everything and everybody around you. And it will grind you right into the ground such that never again will you have the free will to escape.
It sounds like hell.
It is.
Ray.